4: Physical Needs


Chapter 8: Pain And Symptom Control

Defining Pain

Describing Pain and Symptoms

Pain Control Medications

Myths about Pain Control Medication

Other Pain Control Techniques

What Prevents Adequate Pain Control?

General Symptom Control Techniques

Complementary Therapies

Specific Symptoms

Most people can be relatively pain free and alert until they die. The days of people shouting out to die because the pain hurts so bad should be over. No one needs to suffer overwhelming pain anymore. Even in the rare situation of extreme or complex pain, patients can be given short-term relief through drug-induced sleep. Some people still suffer unbearable pain: (a) because they and/or their medical team believe it is typical to suffer a painful death, (b) because the dying patient is being over-treated for their illness but under-treated for their pain, (c) because the patient is not receiving good hospice care including effective pain and symptom control, or (d) because patients or their families are fearful of taking pain medication.

If your loved one is suffering severe pain, get the doctor in charge to check with a palliative care specialist who can suggest ways to stop or greatly reduce the pain now and in the future as the condition changes. We have all the knowledge and skills, right now, to manage most pain. All of the pain may not go away. Most of us suffer from some physical pain from aging, arthritis, back problems, etc. However, unbearable pain is not necessary.

Generally:

Only about 40% of people with cancer have pain during most of their illness. Most cancers do not cause pain.

Most people with advanced cancer have some pain. Much of this pain has been poorly controlled.


According to physicians involved in hospice care, where there is pain, it is controllable in over 95% of the cases.


The secret to effective pain control (relief) is giving the right drug(s), in the right amount, in the right way and at the right time. This balance requires physicians and other hospice team members to do proper, ongoing assessments of a person's pain and to consult with others who may have information that is helpful. Proper pain medication usually prevents overwhelming pain from returning while keeping the patient alert. If pain does suddenly increase (called 'breakthrough pain') extra breakthrough or rescue medication must be available right away to relieve it. In those rare cases when pain resists all treatment, a person can be helped through a drug-induced coma for a period of time to alleviate the pain. No one needs to suffer unmanaged, severe pain that we may have witnessed our parents and grandparents suffer.


Once pain is managed, other symptoms like vomiting, bedsores, and dry mouths may be more easily controlled.


Did you know that one of the most common causes of vomiting for patients with widespread cancer is constipation? Or that vomiting is not the rule for patients with advanced stomach or bowel cancer?


Don't be surprised if you didn't know these facts and don't be surprised if some of your physicians don't know them either. Pain and symptom control is a relatively new field requiring some specialized training. A family physician, or a specialist in cancer or heart diseases, while knowledgeable, may not know the latest techniques of pain and symptom control. As a patient or family member/advocate, you need to ask if the physicians are up-to-date on pain and symptom control techniques or ask them to refer you to a pain management specialist when the need arises. If a patient is in severe pain, and the medication and help they are receiving is not working quickly, they need the help of a pain specialist right away. Ongoing, unrelieved pain is not necessary. A person has a right to good pain control.



Defining Pain

Pain is always subjective because it is what the patient says it is and not what others think it might be or should be based on their experience.

Pain is different than suffering and caregivers must distinguish between the two in order to provide total care to a patient. Pain control deals specifically with keeping a patient relatively pain-free and alert physically. Symptom control deals with other physical-comfort needs of patients with symptoms like nausea, vomiting and bed sores. Suffering includes a person's physical pain and symptoms and the emotional, mental and spiritual pain that are part of a terminal illness, e.g., fear, anxiety, loss of faith, grief or guilt.

I use the term 'relatively pain free' in describing physical pain because patients generally have more than one pain at a time. They may have several pains associated with an illness like cancer, but they may also have arthritis, back pain, various physical disabilities and other pain. Most of us are never pain free especially as we get older. Proper pain control means that we can easily tolerate whatever pains we may have.

Pain can be broken down into three categories:

· Acute pain Toothache, appendicitis, broken leg, after-surgery pain, pinched nerve and pain from various types of tests or treatments. These pains end in a relatively short time.

· Chronic pain Arthritis and other similar disorders which last for more than six months but are not life threatening.

· Terminal-illness pain Pain from an illness in its last stages (remember many illnesses have no pain associated with them). When pain exists, it is likely to increase over time but patients should not feel pain before their next medication is given. If the person continues to feel pain, the physician should increase the dose regularly, even daily, or change to a stronger medication.

Pain is a physical sensation that is modified in the mind by a patient's emotional or spiritual experiences. An example might help explain this best.


Madame E. was 57 years old and in extreme pain from colon cancer. Madame E. was being treated on a palliative ward at Hôpital Sainte-Croix in Drummondville, Québec. She was given different types of pain control (including a pain pump, morphine, and other medications) but none managed her pain satisfactorily. The palliative care team was at a loss of what to do as they had had very good pain control of similar cases.


Her husband was physically present with Madame E. but not seen as very emotionally supportive to her and they shared little eye contact. Their only known daughter (30 years old) was shy except around her anxiety about Madame E.'s pain. Both husband and daughter were constantly requesting more help for Madame E.'s pain but short of inducing sleep (which the family did not want), there was nothing left to do.


The answer of how best to help Madame E. came during a very sad television telecast of the funeral of the 14 women murdered at the Ecole Polytechnique at the University of Montreal on December 6, 1989. Anne Plante, Head Nurse of the Medical and Palliative Care Floor takes up the story. "All the rooms on our floor are single rooms except the room where Madame E. was staying. The patient in the bed next to her had the funeral on the television, as did all the other patients on the floor. There was complete quiet on the floor. No one was calling nurses for help. There were no tears or talking, just silence from the patients as the funeral was shown. Madame E. was the exception. She was sobbing.


I went to Madame E. to ask her what was the worst part of living for her right now. This question usually helps us understand some of the emotional and spiritual as well as physical needs of a patient. It brings us to the central needs in someone's life right now.

"It's Suzanne," answered Madame. E. Through further discussion, Anne Plante was able to find out that Suzanne was Madame E's eldest daughter who died 10 years ago at the age of 21. She was about the same age as the women whose funeral she had been watching. No one in the family had mentioned Suzanne until then.


Suzanne had leukemia and had agreed to an experimental treatment that involved a lot of pain. Her mother felt she had unduly influenced Suzanne into taking the treatment and still felt guilt for the pain Suzanne had suffered.


Madame E. talked about her daughter and her own guilt. Her husband and other daughter were also able to begin to talk about Suzanne. The husband felt useless as he watched first his daughter and then his wife suffer painfully. The other daughter was terribly worried that she would be the next female family member to get sick, suffer terrible pain and die. The family had a cousin and sister-in-law who had suffered pain before their deaths.


They assumed that pain was a natural consequence of dying. At the time of Suzanne's illness, none of them had received any support to communicate openly with Suzanne. They never got to say a proper goodbye or to ask Suzanne if she had any regrets about trying the experimental treatments. There were a lot of unresolved feelings about Suzanne's own courageous decision to try the treatment because no one had talked to Suzanne at the time. The family was reliving, with Madame E., the same closed communication they had had before. They were not talking to each other about their fears, hopes, regrets or their love for each other.


With the help of the nursing team, the family was able to talk about their past grief and losses and to talk about their present fears. This open communication about Madame E's emotional needs caused her to feel less pain. The way the pain was managed did not change but the patient's emotional responses changed, which eased her pain.


The nursing team also helped prepare a 'goodbye ritual' for Suzanne that the family participated in with their family priest. Through prayers and some personal goodbyes they were able to let go of some of their past grief to concentrate on their present emotional needs.

Madame E. came to understand that Suzanne was a mature young woman who decided to take the treatment in hopes of a cure. She was courageous in her choice just as Madame E. had been courageous to offer her support during the ordeal.


Madame E. lived another three weeks with her pain well controlled; she was able to talk with her family until just before her death. The family felt through this experience that open communication drew them closer together to support each other. After Madame E's death, her husband and daughter continued that open communication and grew closer together.


The palliative care team also learned the importance of going beyond the physical needs of a patient to find out what emotional and spiritual needs may need attention as well. They do this now whenever they first meet the patient and family.



Describing Pain and Symptoms

Pain is a very subjective and individual sensation. One person's headache may force him to bed while another person's headache may allow her to continue to work. Culturally, people have different beliefs about how much pain one should tolerate before getting help. All of these factors contribute to how we feel pain and how we describe it.

One of the concepts that came out of the early palliative care work in the 1960s was the concept coined by Dr. Cicely Saunders of "total pain." Total pain refers to not only the physical causes and sensations of pain but the emotional and spiritual dimensions that can make pain thresholds decrease or increase. Although we look at the physical descriptions of pain below, keep in mind that sensations of loneliness, family stress, financial difficulties, isolation, or unresolved grief may all contribute to difficulties in managing pain. If pain is difficult to manage with medication alone then patients, families and professionals need to also consider these emotional and spiritual dimensions.

The following checklist allows you to describe your pain and other symptoms as clearly as possible. If you have more than one pain, make that clear to the physician as well. If you or a family member/friend can, write down the answers to these questions for your doctor. Your physician's assessment of your pain is the key to effective pain management. Give them the information they need to be most helpful.

Where in the body did the pain or symptom begin?

When did it start (date and time)?

On a scale of 1-10, with 10 the worst pain you have ever had (e.g., broken arm, back pain, severe toothache), how would you measure your pain most of the time? After you take painkillers? Before your next dose?

Describe any other symptoms you have had.

What were you doing at the time of the pain or symptom?

To what degree does your pain or symptom limit your normal activities (e.g. breathing, going to the bathroom, eating, moving, sexuality, sleeping or socializing)?

How long does the pain or symptom last? (an hour, all day?)

Is the pain or symptom constant or does it change?

Does the pain or symptom stay in one place or spread out to other parts of your body?

What makes the pain or symptom worse?

What makes the pain or symptom better?

What medications have you already tried for the pain and how well did they work?

Other information?

Words to describe pain can be difficult. You might try one or more of the following.


aching = like the overall discomfort you sometimes feel when you wake up in the morning and your body is sore from sleeping in a wrong position

burning = like the pain from putting your hand on the stove

cramp = like a leg cramp from too much swimming

drilling = like a pain you might have if an electric drill was used on your body

hammering/pounding = like a hammer or drum stick hitting you

knotting = like a bad stomach ache

pinching = like getting pinched by a friend in the play ground when you were a child

shooting = like an electric shock

stabbing = like a mild pin prick to your finger or a more severe knife wound.



Pain Control Medications

Pain has different degrees of intensity. Pain control experts and the World Health Organization (1996) recommend the following 3-step medication ladder to control pain.

Step One For mild pain, take a non-opioid drug, + added drug(s), if necessary.

Step Two For mild to moderate pain, take an opioid drug, + non-opioid and added drug(s) if necessary.

Step Three For moderate to strong pain, take a strong opioid, + non-opioid and added drug(s) if necessary.


Special Notes

The steps go from weakest (Aspirin) to strongest medications (opioids like morphine) only when the pain persists or increases without relief.

For breakthrough or intermittent pain, physicians may prescribe 50-100% of a regular 4-hour dose to take as needed.

For pain due to nerve damage, physicians may prescribe a tricyclic antidepressant or an anticonvulsant. Opioids are not successful with this type of pain.

Added drugs (called adjuvant) are those used to 1) deal with adverse effects of other drugs (e.g., constipation, nausea); 2) enhance the pain relief effects of other drugs; and 3) treat psychological distress that aggravates physical pain (e.g., insomnia, anxiety, depression). Another example is the use of non-steroidal anti-inflammatory agents (NSAIDs) in managing bone pain.

Medication should be given:

By mouth when possible.


By the clock at fixed times before the last dose wears off. (This is why nurses sometimes wake patients up to give them pain medication.)


By the three-step medication ladder above.


For the individual (for example, the range of oral morphine for an individual can be from 5 mg to 1,000 mg every 4 hours).

With special attention to detail.


As the World Health Organization concludes: "The correct dose is the dose that works." (p. 22)


It takes time and experimentation to arrive at the exact combination of medications that will keep a patient pain-free and alert. Patients and families can shorten this process by recording and communicating with the physician and nurses any positive or negative results of new medications. Patients may take several different types of medications to control their specific type(s) of pain. Sometimes, when a dosage is increased or someone changes one medication for another, there is a period where the person may have some nausea and sleepiness. The sleepiness could also come from a lack a sleep before the change in medication and the person is just catching up. If symptoms last more than a few days, the physician must be told.


When discussing pain medication with the physician, it is helpful to have all the pill bottles with you that you are using now. This will improve communication and help the physician answer your questions.


Breakthrough pain happens even when someone has good pain control. This pain suddenly 'breaks through' whatever pain control medication you may have. It requires immediate attention to bring it under control. Many physicians prescribe an extra medication for patients to give themselves if they experience breakthrough pain. The patients report any breakthrough pain to their physician to see if any changes in overall pain control are needed.


Every few years, newer medications including longer acting ones come on the market. For example, there are now patches with slow-release medications that enter the body from the patch through the skin. Some people also benefit from portable pain pumps that provide continuous medication, round the clock, without having to wake up to take it. The pumps have helped people remain relatively active both at home and outdoors. 'Ann's story' in Chapter 4 is an example of this. It is important to know that fewer than 10% of patients require ongoing injections to manage their pain ­ they can take the medication in pill form, as a suppository or as a skin patch.

Pain control through medication is a changing field with constant improvements. It is very important that doctors treating patients with a terminal or life-threatening illness check with a pain control expert for the most recent recommendations. Improved pain control means the patient can carry on daily activities for a longer time.



Myths About Pain Control Medication

Pain experts agree there are three myths about pain control that some physicians and the general public believe in; myths which limit the effective use of medication to control pain. There is a belief that medications given in higher-than-traditional dosages will cause:

Addiction to the drug.

An increased tolerance to the drug that makes the drug ineffective.

Possible hallucinations from taking the drug.


Addiction Patients do not become addicted to opioid drugs when the medication is used for pain. When the medication is given on a regular basis to alleviate pain there are no 'psychological highs' that is the basis of any addiction. Without such euphoria there can be no addiction.

Tolerance to a drug assumes that increasingly higher doses of the medication are needed to relieve pain to the point where the drug becomes ineffective. Studies by experts such as Dr. Robert Twycross of Sir Michael Sobell House in Oxford, have proven that patients can relieve pain by receiving morphine every four hours for over a year without having to increase the dosage. Other studies show that patients can have ever-increasing doses of oral medication to treat worsening pain with the medication still being very effective. Clearly, you don't start with large doses of medication. A physician needs to assess the proper dose and make adjustments as necessary. Expect this to take some time to get the dose right, however, do not tolerate unbearable pain ­ ask for immediate relief.

As Dr. Anna Towers of Palliative Care McGill explains, in the vast majority of cases, if opioid doses need to be increased over time, it is because the patient's disease has progressed and they have more pain, not because they have built up a tolerance to the drug(s).

The key point again is that pain needs to be relieved.

The fear of increased tolerance or drug overdoses lead to a physician prescribing medication on a medical chart with the abbreviation 'PRN' - 'when necessary.' In other words, a patient must feel pain before he can ask the nurse for further medication, a situation that leads not only to unnecessary pain but also to increased anxiety and fear in a patient. The pain threshold is lowered requiring even a greater dose of medication the next time. The myth of tolerance came about because patients were made to suffer unnecessarily. According to the experts this practice of PRN must stop. Studies have shown that medication doses may have to increase over time, but at a slower rate of increase than many physicians expected.

Hallucinations do occur in about one percent of patients (this may improve with newer drugs and techniques). Some of the causes may be metabolic changes such as kidney or liver failure or a person may have brain tumors triggering them. Hospice care teams are well trained to help both the patients and their families deal with hallucinations.

The two major side effects of longterm opioids that are manageable are nausea and constipation. Severe nausea can be almost as uncomfortable as pain. Early attention to diet and medication can certainly help. Constipation causes more misery and health problems than almost any other side effect. It can lead to patients not eating, bowel obstructions, and confusion. It often leads to the emaciated look of cancer patients because they have not been eating. Again, early attention to diet, laxatives and exercise (if possible) will help.


When Is Too Much, Too Much?

The July 29, 2000 issue of the British medical journal, The Lancet, published a report of Drs. Andrew Thorns and Nigel Sykes who did a study of 238 patients who died at St. Christopher's Hospice in London, England. Since this hospice practices effective pain and symptom control to ensure a relatively pain free life before death, the researchers wanted to discover if giving large doses of opiods, such as morphine, shortens life. They concluded that patients with larger doses (to meet their individual pain needs) lived as long as other patients who had not received increased doses of opioids.

Medical literature on pain control is filled with case studies of patients who have received increasing doses of opioids to levels that were once considered deadly. Since the increased doses were done responsibly and to deal with increasing pain, patients can live on hundreds and even a few thousand milligrams of opioids per day without shortening their lives. In fact, when a person is relatively pain free they may well live longer as they are able to sleep better, eat better, join activities with family and friends and feel the supportive environment of the hospice philosophy of care.



Other Pain Control Techniques

There are other treatments for pain control such as:

Radiotherapy Radiation is used to shrink tumors to reduce a patient's symptoms.

Nerve blocks For localized acute cancer pain, a local anaesthetic or nerve destroying injection is given to block nerves from sending pain messages to the brain. Results may be temporary or longlasting.

Hypnosis A hypnotist can sometimes help manage pain.

Neurosurgery With the proper use of medication and other techniques, the need for neurosurgery should be uncommon. If other measures have failed, however, neurosurgery should not be delayed.

Massage To soothe minor pains.

Supportive device Neck collars, slings to support limbs.

Mentholated creams or ointments Like the ones used for sports injuries.

Hot or cold treatments

TENS machines Provide mild electrical stimulus to diminish pain sensations.

Complementary therapies Treatments such as acupuncture therapeutic touch, Rekai, meditation, prayer and imagery.



What Prevents Adequate Pain Control?

Patients and physicians ideally want to maximize control of pain and uncomfortable symptoms. Sometimes, however, their beliefs or seemingly small actions stand in the way of satisfactory control. A few examples:


Patients' Errors

Believing the pain is not treatable.

Not seeing a physician soon enough for help (do not wait for the pain to become unbearable before you get help).

Telling the physician and family that the pain isn't strong. Being 'stoic' may be a way to hide their belief that greater pain means their disease is getting worse. They may also be afraid of the medication itself, or losing control, or 'having a needle'. Their beliefs may have existed for years and even passed down through the family. It will take time to deal with these beliefs.

Failing to take medication. Some people choose not to relieve their pain for personal, religious or cultural reasons. Their decision should be respected and their families given extra support to watch their loved one suffer through the pain. The patient must not be coerced into taking medications but the option of changing their minds must be there for them.

Taking the medication at the wrong times or inconsistently.

Fearing addiction or drug tolerance even when these are not true.

Believing painkillers are only for extreme pain or that opioid use will shorten their life.

Stopping the medication because of side effects and not telling the physician.


Physicians/Nurses' Errors

Ignoring a patient's description of pain.

Not seeing through the patient's brave face.

Prescribing painkillers that are too weak.

Giving painkillers only when the patient says her pain has returned (effective pain control prevents the return of pain).

Not giving enough information about the medication, its use and when it must be taken.

Not knowing enough about different types of medication and how to move from one to another as pain increases.

Not asking for a consultation with a pain specialist in difficult cases ­ the earlier, the better.

Note: To combat pain, we must recognize that pain is always real and unique for each person who has a terminal illness. Proper pain control requires the right drug(s) or treatment(s), in the right way, and at the right time. Proper pain control includes some experimentation to discover the right combination of medication and treatments. This requires the complete cooperation of the patient, the family and the caregivers. When the pain is under control, other symptoms can be addressed, so that the patient's suffering is reduced and he can remain alert and active for as long as possible.

General Symptom Control Techniques

Total pain is not merely the sensation of pain. Total pain is a combination of physical, emotional, and spiritual pain. The primary emotional component of total pain is fear. Fear can greatly aggravate a patient's physical pain, so fear, anxiety and other negative emotions must also be treated. Add to this list diarrhea, constipation, lack of hunger and energy, bedsores, lack of mobility and other symptoms and you will understand the need for thorough symptom control and relief.

Some of the symptom control and stress management techniques that hospice care or home care providers use, other than medications, include:

Diet

Some foods cause constipation while others cause diarrhea. Knowing which foods cause what reaction can help caregivers to alleviate a specific symptom. Certain types of foods also provide better nutrition at a time when someone's appetite is less than normal.

Some Food Tips

A broth before a meal helps to thin secretions in the mouth.

Thick soups and stews are a way to combine protein and vegetables with rice, barley or noodles.

Milk shakes with eggs, malt, cream, and high quality ice cream are good sources of calories and very tasty.

Soft and easy-to-swallow casseroles make good meals.

Omelets, soufflés, quiche and some pasta dishes are also good meals to prepare.

Follow the person's likes and recognize that these preferences for certain foods may change over time.

Don't worry about cholesterol.

The eating environment is very important as eating is also a social event. People tend to eat more in the company of others, especially if the meal is not rushed. The setting can be quiet and relaxing or filled with the typical energy of previous family meals.

Food that is nicely presented makes the whole meal more pleasant.

If the person is having difficulty eating with others, give them the privacy they need and another opportunity to share in a social, family time.

Use a hot plate to keep food warm during the meal.

Use special drinking cups to make it easier to drink and to prevent embarrassing spills.

Help the person wash up before meals.

Use a napkin or towel to protect the person's clothes during a meal.

Prepare food into small chunks if the person has trouble using a knife. Perhaps cut the food away from the table.

If you are helping the person to eat, offer a small amount on a spoon, wait until that bite is gone before offering more (do not rush the person), and do not wash solid food down with liquids.


Exercise

Extended bed rest can lead to bed sores, constipation, back aches, general immobility and loss of muscle strength because the muscles are not being used. Exercises, active or passive, can be done by the patient or with someone's help in bed or they can be done when the patient is out of bed. Walking, stretching and breathing exercises are excellent ways to exercise as long as safety concerns are addressed. People should use walking aids (e.g., cane, walker) if they feel weak to reduce falls. Ask the nurses or physiotherapists to provide some specific exercises. As someone gets nearer to death, of course, they do not need very much exercise.


Preventing Further Illness/Infection Control

People near the end of life are more susceptible to infection. Infections can seriously increase pain and other symptoms. When caring for someone it is wise to wash your hands before and after touching them or their food in any way. This helps prevent infections from spreading from you to them and vice-versa.

Ask your visiting home nurse what kind of hand soap and lotion are best. The following is the easiest way to avoid infections. Insist that other, including medical professionals and volunteers, wash their hands before and after contact with your loved one.

Wet your hands under running warm water.

Add soap to work up a good lather, washing your whole hands vigorously, including the wrists, back of hands, between your fingers and under your fingernails.

Rinse thoroughly and let drip dry in the sink for a moment.

Dry your hands using your own towel or a paper towel.

Turn the faucet off with your used towel (not your bare hands otherwise you may re-contaminate your hands).

You may want to use a hand lotion to prevent dryness or chapping.

It may be wise to use disposable latex or vinyl gloves and a disposable apron if you are likely to touch blood or other body fluids. Dispose of the gloves, dirty dressings, apron, etc., in two plastic bags for extra safety to prevent the spread of infection or disease. Needles should not be thrown into the trash. Put them in a plastic or metal container (e.g., empty bleach bottle) and tape the lid shut once the container is full to prevent needles from falling out accidentally. Check with your nurse about how best to dispose of the needle container.

It is likely in North America that someone will have a cold or flu in your home during the year. Use a mask to cover their mouths if they are coughing and wear one yourself if you need to be near them. Children and pets also spread germs. Remind children about hand washing. Have pets checked by a veterinarian to make sure they are healthy with up-to-date shots. Be especially careful to wash your hands after cleaning up after your pet, cleaning out the litter box or bottom of a cage.


Massage

Gets the blood circulating, invigorates the skin and can be very soothing and or exhilarating depending on the type of massage. Everyone enjoys a massage so it is not a surprise that they are excellent for the physical and emotional well being of a patient as well.


Prayer and Meditation

Done individually or together, prayer and meditation may have a powerful effect on one's ability to deal with total pain. Prayer may also bring a group of individuals together in a common spiritual approach to helping each other.


Occupational Therapy and Physiotherapy

Involves recreation, rehabilitation and physical activities based on a patient's physical capabilities. It encourages people to make decisions and participate in things that they have always enjoyed like a walk in the garden or a card game with friends.


Laughter

Increases production of endorphins (natural chemical painkillers in our bodies), reduces tension, distracts attention, changes expectations, and is an internal jog of organs for exercise. In another sense, laughter is contagious and lets people express their feelings in a less threatening way. It can change the mood of a place faster than any other emotion. Find a few good audiotapes, CDs or videos of comedians like Bill Cosby and sit back and enjoy yourself while you reduce your pain or discomfort.


Relaxation Exercises

Deep breathing, visualization, hypnosis and meditation are all forms of relaxation exercises. They help to relax the body physically and mentally.


Listening

Perhaps no method of symptom control has a greater impact on a patient's fear, anxiety, loneliness and depression than someone who listens unconditionally and answers questions in an honest way.


Heat and Cold Treatments

Applying heat or cold to various body parts can soothe and help to reduce pain.


Distraction

Helping someone to direct their attention away from their pain through music, television, family activities, reading, talking, playing cards, etc. can be very helpful for short periods of time.

The purpose of all of these techniques is to give patients a sense of control over their lives. Even if patients become bedridden, decisions have to be made about exercise, diet, etc. These decisions allow patients to make decisions about their care and give them a sense of control. Independence is very important to people and symptom control helps keep them independent for as long as possible.



Complementary Therapies

Complementary therapies are included in this chapter because I feel that family physicians must coordinate the overall medical treatment of their patients. Therefore, patients and their families should consult their physicians before trying any new therapies. If the patient wants to try a therapy, the physician may suggest resources and present both the pros and cons. In cases where the family physician does not believe in any form of complementary therapy, the patient or caregiver can research the therapy through their library, medical reports or organizations listed in this book. Regardless of the physician's opinion, it is important that patients inform their physicians about any therapies they are trying that may conflict with the medications or treatments the physician and patient have agreed to follow.

The increase in complementary health organizations and treatments force us to be more careful in choosing what is appropriate for us. Some family physicians may encourage their patients to try other treatments not offered by them as long as:

The treatment is not harmful.


Is not expensive (most fraudulent therapies are very expensive).


The practitioners can prove their claims.


The practitioners encourage continued communication with the family physician.


There are holistic physicians, nurses, therapists and others who have received traditional medical training. There are also those without a medical background who have taken certified training from a recognized training facility. There are other practitioners who cannot prove their abilities or their results.


The decision to try a complementary therapy is a personal one and should be made in consultation with your physician and other people you trust. Take precautions to ensure that you are dealing with committed and knowledgeable practitioners. I have included a list of organizations at the back of this book where you can call or write for more detailed information.


There are as many forms of complementary therapies as there are people willing to develop them. Some of these therapies result in physical and/or emotional improvements while others remain in the area of consumer fraud.


Holistic health is a system of care that emphasizes the whole person: physical, cultural, nutritional, environmental, emotional, spiritual and lifestyle. While it encompasses all safe methods of diagnosis and treatment including surgery and medications when appropriate, the difference between holistic care and traditional medical care is that patients take a more active role in their own care. Part of this holistic philosophy includes:


Maintaining a positive attitude toward living to the fullest with hope, humor and inner calm.


Reducing environmental and emotional stresses through relaxation exercises and recreational activities.


Encouraging positive stresses through challenge, nature walks, sex, art and music appreciation.


Eating nutritiously.


Having caring relationships with others and providing support to others.


Using prayer, meditation, visualization and imaging to optimize prevention and healing.


Seeking professional advice and counseling when needed.


I cannot go into detail here about all the complementary treatments available but I will list a few of the more commonly known ones. Many of these therapies are still not accepted by traditional medical people and remain controversial. I am not qualified to suggest that people try or avoid these therapies. There are many medical reports that support or oppose the use of these therapies. Some of these therapies are included in medical insurance benefits while others are not. Check your own policies. Consider the financial costs before deciding on any long-term complementary therapies.


The decision to try complementary therapies must remain with patients. Families and physicians can provide information both for and against a particular therapy but they must respect the patient's decisions unless such decisions will lead to harmful, expensive therapies. True holistic, complementary therapies are neither harmful nor very expensive. They can be powerful healing or comforting methods.


Acupuncture An ancient Chinese technique that can be used to neutralize pain messages going to the brain. Sterile needles are inserted through the skin in pre-determined points, often remote from the site of the actual disorder or pain.

Aromatherapy Using various aromas can trigger healing in the body. Just as the memory of a favorite person's perfume can trigger a comforting memory, other aromas can trigger physical and emotional responses. A trained individual can use the essential oils to help a person relax, relieve anxiety or insomnia, or to stimulate someone who feels sluggish or depressed. Patients and families can learn to use the smells to promote a sense of well being at home.

Autosuggestion Also called autogenic training or self-hypnotism, autosuggestion uses meditative exercises and deep relaxation to help the body naturally balance itself when directed into a relaxed state. Proven useful in treating ulcers, constipation, blood pressure, migraines, asthma, diabetes, arthritis and pain, it is also becoming more popular as a stress management technique.

Biofeedback A self-directed relaxation technique to help regulate your own pulse rate, body temperature and muscle tension. It has, therefore, been effective for people with: high blood pressure, migraine headaches, muscle spasms, back and neck pain, and general tension. Like all relaxation techniques, biofeedback is useful in managing stress, fear or anxiety.

Chiropractic Care A philosophy, science and art to correct interference in the nervous system with the spinal column as the lifeline of the system. Chiropractors manipulate the spine to return its vertebrae to a balanced state, thereby easing back and neck stress and pain. Practitioners also include preventive exercises and improved posture, nutrition and lifestyle programs to maintain a balanced system.

Herbal Therapy Based on Native American, Chinese and Eastern peoples' methods, herbalism has been used to supply vitamins and minerals the body needs without the danger of toxic side effects.

Homeopathy A treatment that gives people very small doses of drugs or chemicals that in a healthy person would produce symptoms like those of the disease itself. The theory is that such treatment increases a person's own immune system responses to help cure or minimize the effects of a disease.

Music Therapy The use of music to evoke peacefulness, to release emotions or to bring back memories. The therapy can involve listening to or playing favorite music, singing songs or the writing of music or songs for therapeutic reasons.

Naturopathy Seeks to balance the relationship between the mind, body and spirit of the individual and his environment, in nature. Naturopathy attempts to improve the resistance within the body to the disease by nourishing it with natural foods and water in order to cleanse the body of its toxins. Emphasis is also placed on developing peace of mind through relaxation exercises, visualization and meditation.

Osteopathy A medical therapy that involves manipulation for correcting body ailments that may be caused by the pressure of displaced bones on nerves.

Therapeutic Touch A simple, ancient method of healing based on the principle of laying-on-of-hands using the energy in one person's hands to help balance the energy in someone else's body. The modern version, taught in some American universities to student nurses, relies on passing one's hands near the patient's body, rather than actually touching them.

Visual Arts Therapy Often called art therapy, this therapy uses visual arts like crafts, drawing, sculpting, jewelry design, photography, or video to help people express their thoughts and emotions in a visual way. One doesn't have to have previous artistic experience to enjoy the benefits of the creative arts.


Specific Symptoms

The following are some tips. Check with the visiting home nurse, home care case manager or family physician before following any of these tips to make sure they apply in your situation. The closer the person nears death, the less aggressive one can be about certain symptom control techniques. For example, someone in their last hours of life does not need to be moved every two hours to prevent bedsores or to have aggressive mouth care.

Note: Whatever the symptom, constant reassurance, talking gently with the person, appropriate touch and comfort go a long way to help with all of the following symptoms. It is your presence, your offer to help, your increasing knowledge and skills about what you are doing that provide the added comfort and safety that helps people through difficult moments. Your presence, as the person nears death, may also be comforting to you as you experience your own feelings and thoughts about what is happening.

Caring for Loved Ones at Home has illustrations and instructions for helping bedridden loved ones, lifting them, using bedpans, giving bed baths, etc.

Appetite Loss (anorexia) Can occur very early on in an illness or as one nears the end of their life. As the body slows down, it needs less food and liquids. This natural loss of appetite does not mean the person is starving themselves or hurting their health. Offer the person small amounts of food on smaller luncheon-size plates and liquids in small glasses. Most will eat in the morning or early afternoon. They may have less energy to eat an evening meal. At some point the person may not want solid food at all and, again, this is natural as the body just doesn't need it any more. We have been taught that you must eat healthy foods to live well. It may be hard for us to stop offering food to our loved ones because it is yet another sign that they are nearing death. When should a person who has a terminal illness stop eating? Follow the person's hunger. If they are not hungry and their loss of appetite is because they are nearing their death, then continue to offer small glasses of water or juices every hour, or popsicles or ice chips. High calorie, high protein drinks may help the person to get enough calories. Intravenous feeding or liquids may be appropriate some times but usually do not lengthen someone's life or provide them comfort. It is important to take care of the person's dry mouth as they take in less food and liquids.

Drinking alcohol may not be wise depending on the medications the person is taking or their physical condition. However, an alcoholic drink before a meal may stimulate someone's appetite or may involve the person in a family tradition. Check with your physician about what is best.

Breathlessness (dyspnea) Is a common and, perhaps, distressing symptom, breathlessness does not lead to choking or suffocation. Simple breathing exercises, having the person sit or lay in a different position, and reassurance to reduce anxiety can help the person feel in control of their breathing again. Some medications may also help depending on the cause of the breathlessness. If their room is dry, use a humidifier. A room with a view outside can also help the person feel less claustrophobic and can reduce their breathlessness. Keep the room comfortably warm or cool. Oxygen treatment may help some people. An electric fan that sends fresh air across, but not into, the person's face may help relieve the sensation of breathlessness. Placing the person's bed or chair by an open door or window can also improve breathlessness. Calming music can relax and slow the breathing rate. Discuss this symptom with your physician.

Confusion/Dementia Can be very upsetting to family members. The person they have known for years is acting strangely. Medication, environmental changes or physical changes can cause a person to be 'mixed-up' or not understand what is happening to them. Confusion may make them suspicious of everyone's behavior. The confusion may be temporary or may continue for the rest of the person's illness. This symptom requires immediate attention by the person's physician and nurses. Do not stop giving pain medication until the cause of the confusion is determined.

Some tips: If the person does not recognize you, identify yourself, tell the person where they are, what day it is, who might be visiting, plans for the day, etc. Use family photos and other personal items to help the person understand who they are and where they are.

Avoid arguments. Use simple questions to get a yes or no answer about specific things (e.g., Would you like your supper now?) Make sure the rooms are safe with furniture out of the way for easy movement, slippers and rugs that do not slip and proper lighting. Good lighting helps the person easily find things or move around safely.

Always remember that the person you have loved is still there. The hands that have comforted you are still there. The arms that have held you are still there. The person's personality may have temporarily or permanently changed, but not the person. Remember them. Remind yourself of them and then see the changes as the disease speaking through them. You will be a source of stability, love and compassion during a difficult time. When my mother went through days of severe confusion when she thought we were trying to kill her, it was immensely traumatic for all of us. She needed us during that time but it was difficult to watch her personality change so dramatically. When she recovered from her confusion (she had been awake and talking for over 48 hours) she had absolutely no memory of what she had experienced or said. She asked us who she had 'hurt' unintentionally so that she could apologize. The apologies were not necessary for us, but important to her. During the early stages of someone's confusion, family members may need more short breaks away from the person. These breaks give them some privacy to deal with the changes in their loved one's personality and allow them to openly express their feelings with a trusted person, away from their loved one.

Constipation Often happens when we eat less, move less and if we are taking painkillers or other drugs. Untreated, constipation is a leading cause of vomiting, bowel blockage, and severe discomfort. Some tips: if the person can eat, a high-fibre diet and lots of fluids are helpful. Whole bran, stewed prunes, fruit and fruit juices, leafy vegetables and whole wheat bread and muffins are all helpful. Lots of liquids are important. A recipe of 1/2 cup applesauce, 1/2 cup of all bran, and 1/4 cup of prune juice helps improve bowel movements as well. Keep refrigerated. Medications may help and in extreme cases an enema may be needed to relieve discomfort. Constipation needs attention to reduce severe discomfort and to prevent sapping a person of their physical energy.

Note Even small doses of opiods, in combination with other factors like decreased fibre and inactivity, can lead to constipation. In some cases, complete bowel obstruction may happen on even small doses of opiods which may result in the person vomiting feces. This can be minimized with proper attention to constipation early on. The person may need a stool softener as well as a laxative. It is advisable, however, for very ill bedridden patients not to take bulk laxatives since they often have inadequate fluid intake to process this kind of laxative.

Depression Can be mild or severe. People who are dying may have periods of sadness or what we call depression. This is quite different from a clinical depression that may, or may not, be linked to the person's illness or from untreated pain. Clinical depression can be treated and must be taken seriously. Depression may be incorrectly diagnosed as clinical (requiring medical treatment) if a patient is completely exhausted because of their illness, treatment or poorly managed pain. Milder depressions must also be taken very seriously and can often be helped by allowing a person some time to be alone with their thoughts and/or providing lots of opportunities for the person to talk about what specifically saddens them about dying. We all have different reasons for being 'depressed' as we come to terms with our lives and our deaths. Try not to superimpose your own reasons for being unhappy on the person but rather let them tell their story in their way over a number of times. Listening, without judgment and without a lot of 'free advice', can be very helpful. Maybe different people can be listeners too to provide the person with as much support as they need.

A simple, open-ended question like "What is it about dying that makes you unhappy right now?"" may open the doors to a good discussion. When I asked my father this question, his immediate response was, "Well, if you were dying son, you'd be unhappy too." When I asked him what specifically made him unhappy, he took a few minutes to think of an answer and rehearse it in his mind. This was a long time for me to be quiet but crucial to encouraging him to choose his words carefully. His answer surprised me, which was the beauty of asking a general question and letting him decide how much he wanted to tell me. He was most unhappy that he could not attend my wedding in seven months. Sharing his unhappiness allowed us to talk about our concerns, worries, fears and hopes for the future. He was able to participate more actively in our wedding plans than he had dared do before. Another useful question is "Are you afraid?"

Medication may be prescribed by a physician to help relieve depression but it is used in conjunction with the above.

Diarrhea Is both uncomfortable and embarrassing. Many people define their personal 'dignity' with an ability to go the bathroom on their own. With diarrhea, especially if one is bedridden, this perceived loss of 'dignity' can be very difficult. There are medications that help with ongoing diarrhea. The rectal area needs extra attention to prevent soreness or rashes. A gentle washing after every bowel movement and using a barrier cream can help.

Few of us feel comfortable having someone help us with bedpans, bed baths and the like. It is important to treat a person with great respect, gentleness and understanding. Allow them to do as much as they can for themselves in private and only help where necessary. If you are very close to the person, remind them that they have done or would do the same for you. Using appropriate humor to 'lighten' the atmosphere can also be helpful. Use the opportunities provided by regular personal care to show your love and intimate respect for the person.

Assisting the nurses when they do the first bed baths at home is a good way to increase your own comfort and competence and may ease both you and your loved one into this new situation.

Use room spray to keep the living area smelling pleasant. Incontinent pads on the bed or adult diapers can provide some comfort. The skin needs extra attention if you use pads. Bowel incontinence may be caused when the bowel is blocked by constipation and should be treated immediately.

Medication can be used to control diarrhea.

Hallucinations Rarely occur as a side effect of medication. They may happen if the person becomes dehydrated, has recently changed medications, or experiences other physical or chemical changes. Encourage the person to relax and stay with them. Their hallucination may be something they are 'seeing' or 'hearing'. It may be comforting (e.g., seeing a dead relative in the room smiling at them) or frightening. Do not leave them alone during a hallucination. Hallucinations must be reported to the physician so the cause can be dealt with. Certainly any distress can be relieved with medication. Family distress at seeing a loved one hallucinate requires someone to ask professionals or volunteers to provide extra support to help you understand what is going on, why and what can be done or not done. The person may not remember hallucinating. Family and other caregivers need to be sensitive to the person's questions about what happened.

Hiccups That last for a long time can be very exhausting and distressing. Breathing exercises, carbonated drinks and some medications will help. Do not let hiccups continue for long before getting some professional advice from a nurse or physician.

Incontinence Of the bladder (when urine leaks out) is just as traumatic for people as uncontrolled diarrhea. When we lose control of our bladders or when we have to wear adult diapers for the first time, it can be hard to get used to the idea. Our sense of personal dignity is so tied to bowel and bladder control that most of us need time to adjust to the idea that we have lost that ability.

That said, many people wear adult diapers and continue to lead full and productive lives with most other people not knowing about their problem. For someone nearing the end of their lives, loving interactions with family and friends can help them put incontinence in to proper perspective. Dignity does not come from bladder control. Dignity is an inherent quality that says we have value and worth in our family and in our communities.

Bedpans and a commode by the bedside can help people go to the bathroom without having to leave their bedside. For incontinence in bed, special incontinence pads are available that are easy to use so that bed sheets do not have to be changed.

Catheters (a plastic or rubber tube placed into the bladder) may be used. These are often very comfortable and do not interfere with mobility.

Insomnia (someone having trouble sleeping) May happen for many reasons: they are cold or hot; they are afraid of the dark; their minds are rushing with information, ideas or concerns; they are afraid because someone told them that most people die in their sleep; they are bored; they are 'achy' from lack of activity; they hear too much noise or they enjoy the quiet time to think without interruption. Whatever the reasons, too little sleep is harmful to the body. Try to discover the cause and see if there is a simple remedy before trying medication.

Of all the possible causes listed, fear may be one of the most important and most difficult to address. While everyone else is sleeping (and we don't want to burden them by waking them up) we spend time worrying about our condition, our family's future, the meaning of our life and more. Addressing some of these concerns with trusted loved ones during the day will help us unburden our minds of some of our fears. If the person who is ill does not want to talk to a loved one, help them find a friend, neighbor, hospice volunteer or professional person (doctor, nurse, social worker, chaplain, spiritual leader) to talk to. Fear is decreased, when we share the fear; not by trying to conquer it on our own.

There are sleep disturbances, like mixing up days and nights that may be caused by the disease. These are not 'fixable' but can be explained and dealt with through emotional supports.

Mouth Problems Can include thrush (Candidiasis), dryness or sores. Thrush are white patches on the inside of cheeks, roof of the mouth, on the tongue or on the back of the throat. It may also be on the esophagus where it cannot be seen. Medication can control thrush. Mouth ulcers are another common symptom requiring a physician or nurse's attention. Mouth care is very important when you are caring for someone who is dying. Here are a few tips:

Clean teeth or dentures after each meal or snack.

Use a soft, nylon toothbrush.

Do not floss too forcefully as this can cause cuts and possible infections.

Do not use mouthwashes with alcohol as these dry the mouth. Instead, rinse the mouth with 1/4 teaspoon of salt or baking soda in a glass of warm water, or mix baking soda with ginger ale (1 ounce ale with 2 teaspoons of baking soda). Spit out either mouthwash.

Use lip balm to moisten the lips.

Use special products designed for mouth care and recommended by the nurse or physician such as swab sticks or lubricating products.

Offer sips of water or other liquids and ice chips often to keep the mouth moist. Keep them in easy reach so the person can choose when they want them.

If the person is bedridden and there are a lot of secretions from the mouth, lay the person on their side more often especially when they are sleeping. Medication may help reduce secretions. In rare cases, family members can be taught to suction if the secretions become troublesome.

Nausea Can drain energy. The causes of nausea can be kitchen odors, certain medication, physical response to an illness, or smells and tastes that trigger a memory of past nausea. Frequent mouth care is very important. Encourage the person to eat often and in small amounts (day and night). Try not to do bowel care just before meals. Have the person change their body position slowly, especially if they are dizzy. Breathing exercises can give a sense of control and comfort back to the person. Too much wax in the ears may cause nausea. Help the person sit up more, especially after a meal. Cold foods may be easier to eat (less smell) e.g., sandwiches, salads, and fruit. Some people find peppermint or ginger tea and other herbal remedies very helpful. Soda crackers, without salt, are also helpful.

Pressure/Bedsores (skin ulcers) Are pressure sores on areas of skin that open up to expose the nerves and surrounding tissue. They can be very painful and almost always preventable. They happen most often where the bones are close to the surface (e.g., wrists, jaw) and on areas where you sit or lie: the buttocks, elbows, knees, hips, shoulders, ankles, heels and back are key areas. Pressure sores happen when someone does not move very much. Someone lying in bed, for example, must move at least every two hours or so to prevent sores. If they cannot move themselves, someone must help them. It is important not to slide the person up in bed but rather to use a draw-sheet to lift and move them as needed.

Proper skin care includes daily washing, skin cream treatments and the use of special supports on the mattress or chair. The person's skin may be dry and fragile so gentle and smooth movement during bathing and lifting help to protect their skin. Wet creams and lotions left on the skin may be quite uncomfortable. Get advice from the home care nurse about what is most appropriate in your situation. The key is to increase blood circulation to the danger spots through movement, less pressure and friction and keeping the area clean and dry. Avoid even gentle massage in reddened areas as it damages the skin further.

Other tips: make sure the bed sheets are dry and clean and smooth (sheet wrinkles can hurt the skin over time). Make sure the person's pajamas are also dry and clean. Use special devices like foot cradles and pillows to keep the weight of the sheets and blankets off the body if they cause reddening of the skin. Use pillows, foams or sponges to protect sensitive areas. For example, use pillows between the legs when the person lies on their side. A home care nurse can show you how to use pillows. Make sure that where the person sits is also comfortable, dry and clean.

A schedule to remind you when to ask someone to turn or to help them turn can be helpful. Modify the following example to the specific needs of the person.

Time

Position

12:00 a.m.

stomach

2:00

left side

4:00

back

6:00

right side

8:00

stomach

10:00

left side

12:00 noon        

back

2:00

right side

4:00

stomach

6:00

left side

8:00

back

10:00

on right side


Restlessness Can be caused by anxiety, boredom, confusion, lack of oxygen, a full bladder or other discomfort. Do not leave the person until you know what has caused the restlessness. Ask for a physician or nurses' advice. You may help the person to become more calm through talking, listening, walking with them, massage, music, dimming the lights, opening a window, using a fan near their face, removing distractions, offering a bed pan and following the person's lead.

Seizures Are frightening for families to observe, especially the first time. It is important to find out the cause of a seizure. Medication is given to prevent further ones. The person going through a seizure may be aware of what is happening to them. Talk to them calmly during the seizure. Make sure the surrounding area is safe, do not try to hold the person down or force their tongue back into their mouths. Do not put anything into their mouth. Breathing may be labored but they will not choke on their tongue. Take a few deep breaths yourself to help you gain control if you are anxious. Reassure them. Try to get the person on their side. Call for help if the seizure is unexpected.

Swallowing Difficulties (dysphagia) Or chewing difficulties can be helped by mincing food or using a blender. You can also moisten foods such as breads and cookies by dunking them into soup or a drink or using gravies or sauces with meats and vegetables. Discuss the specific situation with your physician, nurse or dietician. People with ALS, for example, may have trouble swallowing liquids (it may cause them to choke) so their drinks must be thickened first to help trigger their swallowing reflex.

Blended foods can be made more appetizing by using thickeners and moulds to recreate the appearance of the original. For example, chicken shaped like a chicken leg or carrots like the whole vegetable. Consider consistency, color and taste combinations to stimulate the appetite.

Food supplements may maintain the strength of someone with swallowing problems who can still enjoy eating. These are available through your physician, dietician or pharmacist.

Swelling (edema) May be caused by too much fluid in the tissues. If it is in the arms or hands, remove the jewelry. Provide good skin care and move and reposition the area frequently. Raise the part of the body that is swollen. As with other symptoms, follow the advice of your physician or nurse.

Taste Sensations May be lost in some people. Add more flavorings and spices if the person enjoys them. Some people may also dislike certain foods that they once enjoyed. For example, if they no longer like red meats, they can still get their protein through cheese, eggs, fish, ham, milk, and poultry. If they no longer like sweet foods you can use unsweetened foods and drinks. Many people enjoy sucking on hard candy for the taste and to increase saliva production to keep the mouth moist. Too much candy, however, can make the mouth sore and one must be careful about choking. Smaller candies, especially if the person is lying down, may reduce choking. Sitting up is best. Popsicles are soothing and have a good aftertaste in the mouth especially if they are homemade with fruit juices and purees.

Vomiting Is distressing and debilitating. Medications can help. A cool compress to the forehead and back of the neck can be comforting. Help the person clean their mouths after vomiting to keep the odor and taste away (these may cause more vomiting). Keep the person's head up or to the side. Breathing exercises can be very helpful both as a distraction and to regain control over the abdominal muscles. When the person wants to eat again, offer clear fluids like consommé, broth, ginger ale, apple juice, or flat cola. They might also enjoy Jell-O or soda crackers. Avoid using perfume, colognes or perfumed deodorants as the smell may trigger more vomiting. Keep kitchen odors away. When they can eat more, remember BRAT food: bananas, rice, applesauce and toast.

Weakness Is a common symptom as one's illness progresses. The person's energy ebbs and flows during the day and night and so activities and personal care must be scheduled when a person can be most involved. Some simple exercises can help people regain some of their strength after a long period of inactivity. Follow the person's lead about what can be most helpful to them and when. Wheelchairs or walkers can help the person to save their energy for more important activities. Occupational therapists can teach patients and family how to save energy as well as 'how to do things differently' but with the same results. For example, how someone brushes their hair may take too much energy and weaken the person. Using a different technique will still result in a nice hairdo but also more energy to do other things.

After all the studies have been read, the personal experiences related and the advice given, the underlying principle of total care of the person who has a terminal or life-threatening illness remains cooperation between patient, family and caregivers. A mutual respect and understanding of each other's feelings and needs result in a fuller life for the patient and personal satisfaction for family members and caregivers that they have helped the patient to the best of their abilities.


Chapter 9: What To Expect at the End of Life

Sudden Death

The Last Days or Few Weeks

At the Time of Death

After the Person Has Died

Note: This chapter is only for those caring for someone near the end of life.

It can be traumatic waiting for someone to die if you don't know what to expect. When you understand what is likely to happen, there are fewer surprises and more comfort in knowing that you are doing everything you can to help a person die as comfortably as possible.

The last few days or weeks of life will be amongst the most remembered experiences you will have of your loved one's illness. Ensure that you get proper pain and symptom control, good emotional and spiritual supports and time to be with your loved one in ways that are most comfortable to you both. You will most likely remember the feelings you had rather than the words spoken. This will be true of the other family members and care providers as well so use this time well to nurture positive and life-affirming memories.

Someone who is dying may go through different physical changes. The more you know what to expect the more you will recognize how normal the process is for your loved one. Each person is different, of course, but there are some general trends. Talk to your physician and nurse. The person who is ill may only have some of the following signs.



Sudden Death

A person might die suddenly from a heart attack or stroke or stop breathing unexpectedly. If you were expecting the person to die soon but more slowly, this sudden death might make you want to try and help them to breathe or you might want to call 911. The person has died, quickly, without pain or suffering. It may be difficult to watch such a sudden death, but for the person who has died, it was quick and painless. It is best to take a few minutes to calm yourself. You might want to readjust your loved one's body into a more natural position. You might want to do some of the steps mentioned below to prepare yourself and the body for when the funeral home staff come to pick up your loved one's body.

If you do call emergency services (911) they are legally required in most provinces and states to try to have your loved one breathe again. This is rarely successful and painfully prolongs the person's death. They are rushed to the hospital where life support treatments start, unless you are their Power of Attorney for Personal Care and state they do not want life-support treatment. Once on life support, a decision has to be made about whether to continue the treatments or stop them. This situation can be prevented if you call your family physician or funeral director and avoid calling the emergency number.

In Quebec, many emergency services will honor a letter from the physician stating that your loved one has a terminal illness and that they should not be resuscitated if their heart stops.

Sudden death possibilities should be discussed with your loved one and your family physician in advance so that they can advise you on what they would like you to do in these circumstances.



The Last Days or Few Weeks

The following physical signs or specific needs are presented in the order they often follow in the last days or weeks of someone's life.

The person may sleep longer and may have trouble waking up. You may want to plan your short conversations for when the person is most awake. Ask visitors to stay for only short times and to sit quietly beside the person. You may have been turning the person regularly in bed to prevent bedsores but in the last days if the person is sleeping a lot, this is less necessary. Sleep or silence may also be a way that the person chooses to withdraw from their family and friends as they prepare for their death. It is quite natural to prepare for this next step of dying by withdrawing a bit from the people and things around you.

The person may prefer dim lights in the room if their eyes are sensitive to light. Their vision may also be less clear.

The person may eat and drink less as their appetite decreases. Offer the person small amounts of their favorite light foods and drinks. At the end of life, they will probably have little or no fluids. You may wonder if using an intravenous line to give the person fluids might help the person be more comfortable. Probably not. The body is slowly shutting down and decreased fluid and food intake is a normal part of that just as they will urinate less and have fewer bowel movements. Check with your physician or nurse to make sure this is true for your loved one. Make sure that their mouth, lips, nostrils, and tear ducts are moistened with the proper cream, balms or drops. Ask for visiting nurse for advice.

The person may have trouble swallowing or forgetting to swallow. Give them only what they want to eat or drink. You may remind them they need to swallow. Do not force food or drinks since this can easily lead to vomiting or choking. People near the end of life are just not that hungry or thirsty and that is normal. Place the person on their side and wipe away any fluids that come from the mouth. Sometimes medications will help decrease the amount of fluids.

The person may become confused as their body chemistry changes. They may not recognize everyone or everything and may be confused about time (day of week and time of day). They need your loving reassurance about who they are, who you are and where and when they are right now. These constant reminders plus familiar photos of you all together, calming familiar music, gentle massages and your peaceful presence will all add to their comfort and yours. When my mother and father experienced these periods of confusion, they never remembered afterwards what they did or said and were embarrassed when they found out. Periods of confusion are often harder on the family since the person experiencing them usually doesn't remember what happened.

Bed sheets should be loose for comfort. Tight top sheets can feel quite frightening and make the person more restless or agitated.

The person may have irregular or shallow breathing in a distinct pattern of increasing and then decreasing respiration rates followed by periods of not breathing at all. They may sometimes take very deep breaths. Raising the head of the bed and using pillows may help with breathing. It is common for someone near the end of life to not breathe (sleep apnea) for 10-30 seconds at a time. It is difficult for a family to watch since they do not know if this is the last breath or not, but it is not uncomfortable for the patient. A person might breathe like this for several days before death.

The person may make vocal sounds as if they are in discomfort or pain. If their pain has been well managed, these sounds are probably just their unconscious use of their vocal chords. You can tell if the person is in great discomfort or pain by touching them gently where their pain is located. If there is no difference in their vocal sounds, their pain is probably well managed. If the person's brow is furrowed and they moan in between breaths instead of when they exhale, they may also be in pain. If you are unsure, check with the nurse or physician.

The person may have an irregular heartbeat. Again it is quite normal for the person's heartbeat (or pulse) to change rhythm since the body is slowing down. They may have a rapid pulse several weeks before their death. This is not uncomfortable for them at all.

The person may have 'wet' sounding breathing. This is not uncomfortable for the person but is difficult to listen to as a loved one. If saliva collects at the back of the throat and cannot be swallowed because of weak muscles, the breath may have a 'wet' sound to it. Turn the person on their side so that the saliva can rest in the side of the mouth or dribble out. If the breathing continues, it may be because moisture is in the lungs. Medication can help relieve some of this. Ask your doctor or nurse.

The person may not react to your voice or your touch. They may be sleeping very deeply or in a coma. Continue to talk in a calming, peaceful voice since they may be able to hear you. Note: many people remain conscious until just before death. Although they may appear to sleep longer periods, they are often still conscious.

They may have less pain as their awareness of pain decreases. Sudden, increased pain at the end of life is very rare. Ask the palliative care physician if it would be helpful to decrease pain medication. Also ask when other medications (e.g., insulin, blood pressure medication, 'heart pills') can be stopped.

The person's eyes may remain open even when they are sleeping. If possible, close them gently to prevent them from drying out.

The person may lose control of their bladder and bowels since their muscles are relaxing. The nurse can give you some tips on how to deal with incontinence. The amount of urine decreases near the end of life and is dark in color.

The person may have cool arms and legs as the blood circulation slows down. This does not usually mean that they feel cold, since their internal temperature can be high. In fact, they may become quite restless if they are too warm. Try removing a layer of blanket or comforter if the person is restless. They may also want lighter clothing. The skin may shows spots or streaks of blue or purple, along with bluish or grayish fingernails, toenails and lips. Make sure there is fresh air and reduce odor as much as possible. If the person's knees are pink and their hands and feet are warm, the death will probably not occur for several days.

The person may turn to face the wall as a physical way of retreating from their world and drawing more inward. This is not a slight against their family but a necessary way for them to prepare to leave.

The person may go into a coma that can last for days. They will be unresponsive but may still be able to hear your voice or feel comforted by your touch.

Along with these physical signs at the end of life there are also emotional and spiritual signs. The person may speak less or not at all. They may want to say goodbye. They may see the grief of their loved ones as a comfort that their lives have mattered or they may see such grief as burdensome to their loved ones. They may experience 'seeing' people who live far away or who have died. Do not try to convince them that they are 'just seeing things' but rather support them if these visions make them more comfortable.

Note: It is not uncommon that someone near the end of their life and having some of the above symptoms may improve again for several days or weeks. There is usually no explanation. It can be quite traumatic for a family expecting a death to occur soon to find out that the person is actually 'recuperating' for some time before their death.

Note: Just before a person dies, families sometimes wonder if it might not be better to call an ambulance and bring the person to hospital. If the person is comfortable, the symptoms are described as above and the visiting home nurse or your physician tell you that everything is going well in the circumstances, it is probably best to keep the person home for the last few hours or days. Calling 911 or rushing to the hospital can be traumatic at a time when you are trying to provide a peaceful and loving environment. Make sure you can reach your physician or nurse 24 hours a day to help you cope with changes in your loved one's condition. You may only help someone live at home until they die once or twice in your life. Nurses and physicians have done it many times and can offer you the comfort, information and understanding that you need.



At the Time of Death

The following signs will tell you the person has died:

The person is not breathing anymore.

The person has no pulse or heartbeat.

The person does not respond to sound, touch or movement.

The eyes stay in a fixed position either opened or closed (no blinking).

The person's bladder and bowels may empty.

The facial muscles and jaw relaxes and the mouth may open slightly. With the muscles relaxing, the person's grayish face may have a calm, peaceful look to it.

There could be fluid coming out of the mouth.


After the Person Has Died

Do not call 911 (except in Quebec) or an ambulance.

Write down the time of death. This is needed for legal purposes.

There is no rush to do anything. Take your time to say good-bye, to cry, to talk to the person and to other family members and friends who are with you. There is no legal requirement for you to call your doctor or funeral director immediately. Follow whatever cultural and religious practices you are comfortable with.

When you are ready (and this could be several hours later) call your physician to tell them of the death. The doctor needs to declare officially that your loved one has died.

Call the funeral home where you have pre-planned the funeral. They, in fact, may call your doctor for you and do all the necessary arrangements if that is what you have pre-planned.

If you have not pre-planned a funeral, call your family doctor yourself.

Call your home care nurse or case manager to let them know of the death.

Take time with your family and friends over the next few hours. You may, or may not, be able to sleep or eat. You may need to go for a walk. After my grandfather's body was taken away by the funeral home people, those of us who cared for him went for a long walk in the woods. We remembered stories, we laughed, we cried, we hugged, and we prayed quietly. That memory brings me smiles and tears of love nearly 20 years later. Take the time.

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Family Hospice Care:


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